Innovative social media program designed to keep HIV-affected individuals healthy

Dr. John Zurlo saw his first AIDS patients during his internal medicine residency training in 1984.

The mysterious new disease robbed patients of their ability to fight off infections. They developed an aggressive form of an unusual skin cancer, Kaposi’s sarcoma. Their mouths and throats were covered with oral thrush. They suffered from unusual forms of pneumonia and meningitis and often developed dementia.

Back then, “almost everybody died from AIDS,” says the physician, who went on to train in infectious diseases at the National Institutes of Health. Dr. Zurlo came to Penn State Hershey Medical Center in 1990 and became director of the HIV/AIDS program later that decade. Today, as director of the infectious diseases training program, he still spends much of his time providing care to those with HIV – the virus that leads to AIDS.

AIDS drugs, known as antiretroviral therapy, first came on to the market in 1987. Within the next 10 years they became miracle drugs. Today, thanks to advancements in the drugs and better understanding of the disease, people with HIV who take their medications can control their infections and live full lives without ever developing AIDS. Some of these drugs can now be used as pre-exposure prophylaxis, and can help protect people who are at high risk of contracting HIV. These drugs are highly effective in preventing HIV infection.

Problem solved? Unfortunately, not even close, Dr. Zurlo says. Too many HIV-positive Americans aren’t on antiretroviral therapy —almost 50 percent, according to the most recent statistics from the Centers for Disease Control and Prevention. And too many people still contract the virus: There are roughly 50,000 new infections in the U.S. every year.

“The challenge is that the population we need to reach—which is largely young people—is really not engaged in care,” Dr. Zurlo says. “They’re not diagnosed or, if they are, they’re not in care. And if they are getting care, they’re not taking their medications. Therefore, when you look at the big picture of 1.2 million people in the United States who are infected with HIV, only about 30 percent have full control of it.”

A major obstacle is overcoming the stigma that is still attached to HIV/AIDS more than three decades after its emergence. That stigma, Dr. Zurlo says, discourages young people from getting tested and sticking to their treatment.

“For a lot of our patients, just showing up in clinic is a reminder of something they don’t want to think about,” he says.

Dr. Zurlo is committed to changing the statistics across the full HIV care continuum, which actually starts with people who are at risk but not infected yet. His team recently received a $1.2 million grant from HRSA, the federal government’s Health Resources and Services Administration, to use the power of social media to get more people between the ages of 13 to 34 into the HIV care continuum.

Under his leadership, the Medical Center is teaming up with three other providers in the greater Harrisburg area—Alder Health Services, Hamilton Health Center and the PinnacleHealth REACCH Program—to address unmet needs around HIV/AIDS using social media.

The program will target two groups of young people. The first is the group of youth and young adults in Harrisburg and surrounding rural communities who are at risk for or diagnosed with HIV but have either not linked to care or have fallen out of care. The second group is current patients who are at high risk for falling out of care, going off their meds, and transmitting HIV in the community.

“Nationally, the loss-to-follow-up rate is enormous with HIV, but especially among young people, and even more so among young men of color,” Dr. Zurlo says. “They’re less likely to be diagnosed, less likely to be in care, less likely to be on medicine, and therefore less likely to have control of their infection.”

The Medical Center already has an HIV/AIDS social media campaign aimed at youth called OPT-In For Life. (“OPT” stands for Opportunities to Prevent Transmission.) The website, along with the program’s Facebook, Pinterest and Twitter pages, are places where young people can learn about HIV/AIDS resources and connect with the community.

The new funding will be used to expand the OPT-In For Life campaign and aggressively market it to underserved communities in central Pennsylvania, including LGBT, African American and Latino youth. Dr. Zurlo hopes a new mobile app, fresh content and active chat rooms will encourage young people to engage in their care. Patients will be able to communicate directly with their health-care team through the app. The funding will also pay for banner ads on OPT-In For Life’s social media sites and on popular dating apps to promote free local HIV testing.

Dr. Zurlo’s team set hard goals and objectives for the program, which range from increasing social media followers and getting more people tested to improving antiretroviral therapy stats and decreasing viral loads.

“Here we are sitting on this gold mine of incredible treatment for HIV, and nobody has to die of it anymore. You don’t see AIDS-related complications like I once saw at the beginning of the epidemic,” Dr. Zurlo says.

He, like many others in the field, is confident that a cure for AIDS will be found in our lifetime: “The message I want to get out there is: This is what you need to do in order to stay well until we can cure you.”